That lady who described waiting for a transplant as like being in a washing machine really had a great metaphor. She is so right, it isn't a rollercoaster whereby ups are followed by downs, it really is every emotion coming at you at once. Today is a very sad day as we heard that a little boy who we heard of at Birmingham died yesterday following complications arising from his third small bowel and liver transplant. I feel so much for his family and can't help but feel a pang of panic at the same time. William still has his line infection and is very up and down at the moment. The team here are pleased he has a potential transplant on the horizon and see it as a very positive thing for him. We know so many stories of transplants with very happy endings. All this information is there in your mind, filling it with worry, if not terror and hope and optimism all at the same time. It is exhausing! I am keeping my mind occupied with the practical preparations for next Friday when we go live on the transplant list. The girls' bags are now packed and I have nearly all I need for mine and William's. William's clothes need washing and packing and I need a few more bits and pieces and we will be ready. I feel so much better when I am organising things as if feels like there is something I can do about all this.
Of course, the rest of life goes on too. I have managed to get some work done today as well - both Brompton Fountain work and an assignment for my theology course. I am very fed up with being in hospital now and so hope we can get shot of William's line bugs and get him home so we can be together as a family.
Taling of washing machines, the one here is broken! A broken washing machine on a ward where gastro children are treated is far from ideal. I spent ages yesterday trying to wash the yellow and green stains from William's clothes. I hope we are home in time for me to wash William's clothes for the transplant bag or I will have to rely on Paul finding the time in his hectic Glyndebourne end of term schedule of last shows and parties.
2 comments:
thinking of you so much Sarah....chat soon xxx
just catching up with your blog. Thinking of you all xxxxxx
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